Define “Caregiver Burden” and list the most common signs associated with caregiver burden
Identify all care team members involved in the care of dementia patients
Present the outcome measure most associated with the identification of direct caregiver stress
List simple and helpful strategies to prevent and/or reduce caregiver burden in individuals or family members caring for those with dementia
Dementia Overview:
Dementia is a complex phenomenon taking on various presentations considering its cause, which can be primary or secondary. Alzheimer’s dementia is the most prevalent type of dementia, occurring in 60% to 80% of cases, with vascular dementia being the second most common type of dementia.1 In those diagnosed with dementia, it can be a struggle to complete everyday tasks, for as the disease progresses, people lose not only their mental capabilities but also their physical (or motor) capabilities. Along with needing assistance with their finances, short-term memory, and problem solving, they may also require assistance with toileting, dressing, feeding, and ambulating. It is important to know the signs and symptoms of dementia so that we can educate others of the 10 most common warning signs of Alzheimer’s. Looking for these signs may help in the early identification of the disease, so that these people can get the care they need to improve their quality of life for as long as possible. While there is no specific cure or treatment for those diagnosed with Alzheimer’s, there are medications that can improve symptoms.
10 Early Signs and Symptoms of Alzheimer’s1:
Memory loss that disrupts daily life
Challenges in planning or problem solving
Difficulty completing familiar tasks at home, at work, or at leisure
Confusion with time or place
Trouble understanding visual images and spatial relationships
New problems with words in speaking or writing
Misplacing things and losing the ability to retrace steps
Decreased or poor judgment
Withdrawal from work or social activities
Changes in mood or personality
The disease progresses at different rates for different people, depending on the cause. Alzheimer’s patients, in particular, are typically staged in one of two ways. They can be categorized into 3 stages, “mild”, “moderate,” and “severe,”5 or the Global Deterioration Scale (or GDS) can be used, which divides the disease process into seven stages based on the amount of cognitive decline.3 The GDS stages are listed below and have been taken directly from Dementia Care Central online. 3
Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (also known as the Reisberg Scale)
Diagnosis
Stage
Signs and Symptoms
No Dementia
Stage 1:
No Cognitive Decline
In this stage the person functions normally, has no memory loss, and is mentally healthy. People with NO dementia would be considered to be in Stage 1.
No Dementia
Stage 2:
Very Mild Cognitive Decline
This stage is used to describe normal forgetfulness associated with aging; for example, forgetfulness of names and where familiar objects were left. Symptoms are not evident to loved ones or the physician.
No Dementia
Stage 3:
Mild Cognitive Decline
This stage includes increased forgetfulness, slight difficulty concentrating, decreased work performance. People may get lost more often or have difficulty finding the right words. At this stage, a person’s loved ones will begin to notice a cognitive decline. Average duration: 7 years before onset of dementia
Early-stage
Stage 4:
Moderate Cognitive Decline
This stage includes difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam. Average duration: 2 years
Mid-Stage
Stage 5:
Moderately Severe Cognitive Decline
People in this stage have major memory deficiencies and need some assistance to complete their daily activities (dressing, bathing, preparing meals). Memory loss is more prominent and may include major relevant aspects of current lives; for example, people may not remember their address or phone number and may not know the time or day or where they are. Average duration: 1.5 years
Mid-Stage
Stage 6:
Severe Cognitive Decline (Middle Dementia)
People in Stage 6 require extensive assistance to carry out daily activities. They start to forget names of close family members and have little memory of recent events. Many people can remember only some details of earlier life. They also have difficulty counting down from 10 and finishing tasks. Incontinence (loss of bladder or bowel control) is a problem in this stage. Ability to speak declines. Personality changes, such as delusions (believing something to be true that is not), compulsions (repeating a simple behavior, such as cleaning), or anxiety and agitation may occur. Average duration: 2.5 years
Late-Stage
Stage 7:
Very Severe Cognitive Decline (Late Dementia)
People in this stage have essentially no ability to speak or communicate. They require assistance with most activities (e.g., using the toilet, eating). They often lose psychomotor skills, for example, the ability to walk. Average duration: 2.5 years
What does “Caregiver Burden” look like?
As defined by the medical dictionary, caregiver burden is “the perception of stress and fatigue caused by the sustained effort required in caring for persons with chronic illness or other conditions with special needs for care.”4 Signs of caregiver burden are widely variable, depending on how well a caregiver adapts to caregiving demands.8 Some of the most commonly noted signs to look for are as follows6:
Anxiety/depression
Irritability/mood swings
Sleep Disturbances
Overreaction to otherwise normal stimuli
Health issues
Fatigue/exhaustion
Social isolation
Neglecting normal responsibilities
Trouble concentrating
Drinking, smoking, or eating more often
Being able to be sensitive to any of the above complaints in dementia caregivers is important in providing them early respite, before complete burnout is reached. What is often not realized is that not only do dementia patients need proper daily care but also their caregivers; for a number of reasons, but in large part, because those caregivers are people typically very close to the patient, and it can be very frustrating and difficult to watch someone you know and love struggle to live life the way they used to and not be able to.
Who typically cares for Dementia patients?
The care team for dementia patients can include but is not limited to the following: primary care physicians, physical therapists, occupational therapists, nurses and nursing aids, nutritionists, continuing care workers, family members, neighbors, and friends. Most of the burden is put directly on family or friends who have agreed to take personal responsibility for the patient and assist them with daily activities as they progress through the various stages of dementia.
How do we, as physical therapists, identify caregiver burden?
The most frequently used measure in identifying caregiver burden specifically in the dementia population is the Zarit Burden Interview. It is a 22-item self-report inventory of direct stress and has demonstrated validity, reliability, and good sensitivity to change, making it a measure of primacy in the dementia realm.9 Below is the dementia assessment measure with directions on how it is to be performed, how it is to be scored, and how it is to be interpreted.
The Zarit Burden Interview:
0: Never
1: Rarely
2: Sometimes
3: Quite Frequently
4: Nearly Always
Please circle the response that best describes how you feel:
Question
Score
1. Do you feel that your relative asks for more help than he/she needs?
0 1 2 3 4
2. Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself?
0 1 2 3 4
3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?
0 1 2 3 4
4. Do you feel embarrassed over your relative’s behavior?
0 1 2 3 4
5. Do you feel angry when you are around your relative?
0 1 2 3 4
6. Do you feel that your relative currently affects our relationships with other family members or friends in a negative way?
0 1 2 3 4
7. Are you afraid what the future holds for your relative?
0 1 2 3 4
8. Do you feel your relative is dependent on you?
0 1 2 3 4
9. Do you feel strained when you are around your relative?
0 1 2 3 4
10. Do you feel your health has suffered because of your involvement with your relative?
0 1 2 3 4
11. Do you feel that you don’t have as much privacy as you would like because of your relative?
0 1 2 3 4
12. Do you feel that your social life has suffered because you are caring for your relative?
0 1 2 3 4
Question
Score
13. Do you feel uncomfortable about having friends over because of your relative?
0 1 2 3 4
14. Do you feel that your relative seems to expect you to take care of him/her as if you were the only one he/she could depend on?
0 1 2 3 4
15. Do you feel that you don’t have enough money to take care of your relative in addition to the rest of your expenses?
0 1 2 3 4
16. Do you feel that you will be unable to take care of your relative much longer?
0 1 2 3 4
17. Do you feel you have lost control of your life since your relative’s illness?
0 1 2 3 4
18. Do you wish you could leave the care of your relative to someone else?
0 1 2 3 4
19. Do you feel uncertain about what to do about your relative?
0 1 2 3 4
20. Do you feel you should be doing more for your relative?
0 1 2 3 4
21. Do you feel you could do a better job in caring for your relative?
0 1 2 3 4
22. Overall, how burdened do you feel in caring for your relative?
0 1 2 3 4
Interpretation of Score:
0-21: Little or No Burden
21-40: Mild to Moderate Burden
41-60: Moderate to Severe Burden
61-88: Severe Burden
Strategies to prevent and/or reduce caregiver burden:
Because caregiver burden is becoming so prevalent as the number of those “aging in place” is increasing, providing helpful tips and strategies to caregivers to avoid caregiver stress or burnout is important in building trusting relationships with patients and in improving the quality of life of everyone involved. In a study by Papastavrou, et al.,7 researchers concluded that caregivers, specifically women, tend to need more individualized instruction on how to manage the behaviors of family members with dementia. Those that were found to have higher levels of stress tended to have more emotional based coping strategies whereas those that perceived less burden or stress tended to have more problem-solving coping strategies. Therefore, below, are helpful tips that you might be able to provide to those that need a little more assistance in coping methods when caring for a dementia family member.2,6
Tips:
Encourage proper exercise
Instruct in time management and problem-solving strategies
Encourage staying on top of personal doctor’s appointments
Encourage adequate amounts of sleep
Teach caregivers to say “yes” when someone offers assistance
Provide resources for support groups
Suggest anti-anxiety or antidepressant medication if warranted
Encourage an appropriate diet
Encourage caregivers to take part in activities that they find calming or relaxing, i.e.
Yoga/Meditation/Prayer
Old hobbies
Music
Tai Chi
Massage therapy
Acupuncture
Aromatherapy
10. Help them to celebrate the small victories
11. Encourage positive social relationships
12. Teach caregivers to delegate tasks to others if needed
13. Prioritize their responsibilities
14. Encourage caregivers to speak up when they need help
15. Avoid stimulants like coffee or chocolate and avoid using alcohol or tobacco to escape stressful events or
feelings
"Caregiver Stress and Burnout." Caregiver Stress & Burnout: Tips for Regaining Your Energy, Optimism, and Hope. N.p., n.d. Web. 07 July 2017.
"Seven Stages of Dementia | Symptoms & Progression." Dementia Care Central. N.p., n.d. Web. 07 July 2017.
"Caregiver burden." The Free Dictionary. Farlex, n.d. Web. 07 July 2017.
"Caring for a Person With Dementia." WebMD. WebMD, n.d. Web. 07 July 2017.
"Strategies to Reduce Caregiver Stress." Strategies to Reduce Caregiver Stress. N.p., n.d. Web. 07 July 2017.
Papastavrou, Evridiki, Athena Kalokerinou, Savvas S. Papacostas, Haritini Tsangari, and Panagiota Sourtzi. "Caring for a relative with dementia: family caregiver burden." Journal of Advanced Nursing. Blackwell Publishing Ltd, 17 Apr. 2007. Web. 07 July 2017.
Jennifer J. Dunkin PhD. "Dementia Caregiver Burden: A Review of the Literature and Guidelines for Assessment and Intervention." Neurology. N.p., 01 July 1998. Web. 07 July 2017.
Seng, Boon Kheng, Nan Luo, Wai Yee Ng, June Lim, Hui Ling Chionh, Jenny Goh, and Philip Yap. "Validity and Reliability of the Zarit Burden Interview in Assessing Caregiver Burden." Annals Academy of Medicine(2017)
The objectives of this page are to:
Dementia Overview:
Dementia is a complex phenomenon taking on various presentations considering its cause, which can be primary or secondary. Alzheimer’s dementia is the most prevalent type of dementia, occurring in 60% to 80% of cases, with vascular dementia being the second most common type of dementia.1 In those diagnosed with dementia, it can be a struggle to complete everyday tasks, for as the disease progresses, people lose not only their mental capabilities but also their physical (or motor) capabilities. Along with needing assistance with their finances, short-term memory, and problem solving, they may also require assistance with toileting, dressing, feeding, and ambulating. It is important to know the signs and symptoms of dementia so that we can educate others of the 10 most common warning signs of Alzheimer’s. Looking for these signs may help in the early identification of the disease, so that these people can get the care they need to improve their quality of life for as long as possible. While there is no specific cure or treatment for those diagnosed with Alzheimer’s, there are medications that can improve symptoms.
10 Early Signs and Symptoms of Alzheimer’s1:
The disease progresses at different rates for different people, depending on the cause. Alzheimer’s patients, in particular, are typically staged in one of two ways. They can be categorized into 3 stages, “mild”, “moderate,” and “severe,”5 or the Global Deterioration Scale (or GDS) can be used, which divides the disease process into seven stages based on the amount of cognitive decline.3 The GDS stages are listed below and have been taken directly from Dementia Care Central online. 3
Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (also known as the Reisberg Scale)
No Cognitive Decline
Very Mild Cognitive Decline
Mild Cognitive Decline
Moderate Cognitive Decline
Moderately Severe Cognitive Decline
Severe Cognitive Decline (Middle Dementia)
Very Severe Cognitive Decline (Late Dementia)
What does “Caregiver Burden” look like?
As defined by the medical dictionary, caregiver burden is “the perception of stress and fatigue caused by the sustained effort required in caring for persons with chronic illness or other conditions with special needs for care.”4 Signs of caregiver burden are widely variable, depending on how well a caregiver adapts to caregiving demands.8 Some of the most commonly noted signs to look for are as follows6:
Being able to be sensitive to any of the above complaints in dementia caregivers is important in providing them early respite, before complete burnout is reached. What is often not realized is that not only do dementia patients need proper daily care but also their caregivers; for a number of reasons, but in large part, because those caregivers are people typically very close to the patient, and it can be very frustrating and difficult to watch someone you know and love struggle to live life the way they used to and not be able to.
Who typically cares for Dementia patients?
The care team for dementia patients can include but is not limited to the following: primary care physicians, physical therapists, occupational therapists, nurses and nursing aids, nutritionists, continuing care workers, family members, neighbors, and friends. Most of the burden is put directly on family or friends who have agreed to take personal responsibility for the patient and assist them with daily activities as they progress through the various stages of dementia.
How do we, as physical therapists, identify caregiver burden?
The most frequently used measure in identifying caregiver burden specifically in the dementia population is the Zarit Burden Interview. It is a 22-item self-report inventory of direct stress and has demonstrated validity, reliability, and good sensitivity to change, making it a measure of primacy in the dementia realm.9 Below is the dementia assessment measure with directions on how it is to be performed, how it is to be scored, and how it is to be interpreted.
The Zarit Burden Interview:
0: Never
1: Rarely
2: Sometimes
3: Quite Frequently
4: Nearly Always
Please circle the response that best describes how you feel:
0-21: Little or No Burden
21-40: Mild to Moderate Burden
41-60: Moderate to Severe Burden
61-88: Severe Burden
Strategies to prevent and/or reduce caregiver burden:
Because caregiver burden is becoming so prevalent as the number of those “aging in place” is increasing, providing helpful tips and strategies to caregivers to avoid caregiver stress or burnout is important in building trusting relationships with patients and in improving the quality of life of everyone involved. In a study by Papastavrou, et al.,7 researchers concluded that caregivers, specifically women, tend to need more individualized instruction on how to manage the behaviors of family members with dementia. Those that were found to have higher levels of stress tended to have more emotional based coping strategies whereas those that perceived less burden or stress tended to have more problem-solving coping strategies. Therefore, below, are helpful tips that you might be able to provide to those that need a little more assistance in coping methods when caring for a dementia family member.2,6
Tips:
- Encourage proper exercise
- Instruct in time management and problem-solving strategies
- Encourage staying on top of personal doctor’s appointments
- Encourage adequate amounts of sleep
- Teach caregivers to say “yes” when someone offers assistance
- Provide resources for support groups
- Suggest anti-anxiety or antidepressant medication if warranted
- Encourage an appropriate diet
- Encourage caregivers to take part in activities that they find calming or relaxing, i.e.
- Yoga/Meditation/Prayer
- Old hobbies
- Music
- Tai Chi
- Massage therapy
- Acupuncture
- Aromatherapy
10. Help them to celebrate the small victories11. Encourage positive social relationships
12. Teach caregivers to delegate tasks to others if needed
13. Prioritize their responsibilities
14. Encourage caregivers to speak up when they need help
15. Avoid stimulants like coffee or chocolate and avoid using alcohol or tobacco to escape stressful events or
feelings
Additional Resources:
Taking Care of YOU: Self-care for Family Caregivers
https://www.caregiver.org/taking-care-you-self-care-family-caregivers
Resources for Caregivers of Diverse Populations and Specific Age Groups
http://www.apa.org/pi/about/publications/caregivers/resources/populations.aspx
Family Caregiver Toolbox
http://www.caregiveraction.org/family-caregiver-toolbox
How to Feel Empowered as a Caregiver
http://www.aarp.org/home-family/caregiving/info-12-2013/caregiving-stress-burnout-jacobs.html
Caregiver Resources
https://alzheimers.acl.gov/caregiver_resources.html
References: